Re: cea studies (PLEASE read)

[Guest guest]

Rose,

Two things in regards to your post. One is this link:

http://www.centerwatch.com/patient/studies

which is a service that tracks and reports on clinical trials. I

have not yet seen anything there that my derm or this board hasn't

covered. There are also many other specific sites that return from

Yahoo search engine using " rosacea clinical trials. "

That brings me to my next point. Please forgive me if this sounds

like a tyrade, you just bring an excellent point. Here goes,

I strongly believe that the best way to a cure, or improved

treatment, for this thing is cash - cold, hard cash. I believe this

for two reasons. First, the cynical side of me says that research

goes where the money is. Second, the hopeful side of me says that

good researchers just need money to get their work done. I'm not

sure I'vee seen or heard about another disease which is so widespread

that has drawn so little attention, and thus, research money.

With that in mind, I am going to say that I am putting my money where

my mouth is. I intend to donate heavily to the National cea

Society. I understand this isn't something everyone can do, but I've

been very fortunate, financially at least. I also really want to be

able to help out everyone who is suffering with this. I've also seen

so many " products " out there that are potentially diverting good

monies from useful research to the pockets of some scam artist.

You've helped me decide on something that I've been pondering. Why

should we not start right here raising money for the NRS grants?

Here's a wishful projection, but just for fun, let's say that each of

the $13 million people with cea just sent in $1. That's

$13,000,000 for research, far more than has probably gone in total to

researching this disease.

So, with that in mind, I have resolved to do several things:

1) Send in my check

2) Encourage each and every person on this board to do the same

3) Encourage research and oversight of the monies in/out of NRS to

insure legitimacy

4) Urge each person who gives, to encourage others - with or without

rosacea, to contribute

Disclaimer - I am NOT in any way going to benefit from these

donations unless a cure is found, financially or otherwise. I do not

work for NRS or any drug companies. I'm just a guy with cea,

trying to help the best way I can.

I really believe a cash infusion would eventually result in some

answers. And as for me, I want some answers.

Again, thanks for the inspiration and sorry for the soap-boxing.

My best regards and best wishes to all.

[Guest guest]

Very good points , but I'm afraid I have to disagree with you.

You're right when you say that this disease is so widespread, though

not well publicized, but I think this is largely because the vast

majority of people afflicted show such mild clinical signs that they

are either unaware they have it or simply don't care. Such people are

rarely members of support groups like this.

In addition, the amount of research in the U.S is largely dictated by

the drug companies who, I assure you, are well aware of the potential

profits from widespread problems such as rosacea (just look at the

huge drive to find a solution for male pattern baldness).

The real question for these companies is what is the likelihood of

finding an effective treatment?

One piece of advice I was given in vet school was: " If you're going to

become a specialist, be a dermatologist: you're never on call and

nobody expects your patients to get better! "

Many a true word said in jest.

[Guest guest]

Very good points , but I'm afraid I have to disagree with you.

You're right when you say that this disease is so widespread, though

not well publicized, but I think this is largely because the vast

majority of people afflicted show such mild clinical signs that they

are either unaware they have it or simply don't care. Such people are

rarely members of support groups like this.

In addition, the amount of research in the U.S is largely dictated by

the drug companies who, I assure you, are well aware of the potential

profits from widespread problems such as rosacea (just look at the

huge drive to find a solution for male pattern baldness).

The real question for these companies is what is the likelihood of

finding an effective treatment?

One piece of advice I was given in vet school was: " If you're going to

become a specialist, be a dermatologist: you're never on call and

nobody expects your patients to get better! "

Many a true word said in jest.

[Guest guest]

Very good points , but I'm afraid I have to disagree with you.

You're right when you say that this disease is so widespread, though

not well publicized, but I think this is largely because the vast

majority of people afflicted show such mild clinical signs that they

are either unaware they have it or simply don't care. Such people are

rarely members of support groups like this.

In addition, the amount of research in the U.S is largely dictated by

the drug companies who, I assure you, are well aware of the potential

profits from widespread problems such as rosacea (just look at the

huge drive to find a solution for male pattern baldness).

The real question for these companies is what is the likelihood of

finding an effective treatment?

One piece of advice I was given in vet school was: " If you're going to

become a specialist, be a dermatologist: you're never on call and

nobody expects your patients to get better! "

Many a true word said in jest.

[Guest guest]

Personally, I think the biggest reason for the unbelievable lack of cea

research is that most companies don't realize that there is no effective

treatment for cea. Big companies might think, well there's

Metronidazole, tetracyclines, sulfur products, Isotretinoin.. why is there

a need for any more treatment? Almost every article I read on the subject

talks about how cea is easily controllable. Not until you see a rare

article actually published by an expert in the field, will you find out that

cea is absolutely 100% NOT easily controllable! And even if it cant be

controlled, unless someone personally suffers from a severe case of cea,

I don't think they can understand just how devastating it can be. Plus, the

disease is unbelievably poorly well-known.. Compared to other disorders,

there's nothing written about it anywhere.. Parkinson's disease for

example, affects 1 to 1 1/2 million americans. (Approximately 7-12% of the

amount of people who suffer from cea) But even typing in a parksinsons

(without the apostrophe, which is an incorrect spelling) will give you just

as many hits on any search engine as cea will. The correct spelling

will give you about 800% more hits than cea will. As a group if we

could get together and come up with ways to stimulate cea research, then

maybe in five or ten years there won't be as much of a need for a group like

this.

Adam

Re: cea Studies (PLEASE Read)

> Very good points , but I'm afraid I have to disagree with you.

>

> You're right when you say that this disease is so widespread, though

> not well publicized, but I think this is largely because the vast

> majority of people afflicted show such mild clinical signs that they

> are either unaware they have it or simply don't care. Such people are

> rarely members of support groups like this.

>

> In addition, the amount of research in the U.S is largely dictated by

> the drug companies who, I assure you, are well aware of the potential

> profits from widespread problems such as rosacea (just look at the

> huge drive to find a solution for male pattern baldness).

>

> The real question for these companies is what is the likelihood of

> finding an effective treatment?

>

> One piece of advice I was given in vet school was: " If you're going to

> become a specialist, be a dermatologist: you're never on call and

> nobody expects your patients to get better! "

>

> Many a true word said in jest.

>

>

>

> --

> Please read the list highlights before posting to the whole group

(http://rosacea.ii.net/toc.html). Your post will be delayed if you don't

give a meaningful subject or trim your reply text. You must change the

subject when replying to a digest !

>

> See http://www.drnase.com for info on his recently published book.

>

> To leave the list send an email to

rosacea-support-unsubscribe

>

>

[Guest guest]

Personally, I think the biggest reason for the unbelievable lack of cea

research is that most companies don't realize that there is no effective

treatment for cea. Big companies might think, well there's

Metronidazole, tetracyclines, sulfur products, Isotretinoin.. why is there

a need for any more treatment? Almost every article I read on the subject

talks about how cea is easily controllable. Not until you see a rare

article actually published by an expert in the field, will you find out that

cea is absolutely 100% NOT easily controllable! And even if it cant be

controlled, unless someone personally suffers from a severe case of cea,

I don't think they can understand just how devastating it can be. Plus, the

disease is unbelievably poorly well-known.. Compared to other disorders,

there's nothing written about it anywhere.. Parkinson's disease for

example, affects 1 to 1 1/2 million americans. (Approximately 7-12% of the

amount of people who suffer from cea) But even typing in a parksinsons

(without the apostrophe, which is an incorrect spelling) will give you just

as many hits on any search engine as cea will. The correct spelling

will give you about 800% more hits than cea will. As a group if we

could get together and come up with ways to stimulate cea research, then

maybe in five or ten years there won't be as much of a need for a group like

this.

Adam

Re: cea Studies (PLEASE Read)

> Very good points , but I'm afraid I have to disagree with you.

>

> You're right when you say that this disease is so widespread, though

> not well publicized, but I think this is largely because the vast

> majority of people afflicted show such mild clinical signs that they

> are either unaware they have it or simply don't care. Such people are

> rarely members of support groups like this.

>

> In addition, the amount of research in the U.S is largely dictated by

> the drug companies who, I assure you, are well aware of the potential

> profits from widespread problems such as rosacea (just look at the

> huge drive to find a solution for male pattern baldness).

>

> The real question for these companies is what is the likelihood of

> finding an effective treatment?

>

> One piece of advice I was given in vet school was: " If you're going to

> become a specialist, be a dermatologist: you're never on call and

> nobody expects your patients to get better! "

>

> Many a true word said in jest.

>

>

>

> --

> Please read the list highlights before posting to the whole group

(http://rosacea.ii.net/toc.html). Your post will be delayed if you don't

give a meaningful subject or trim your reply text. You must change the

subject when replying to a digest !

>

> See http://www.drnase.com for info on his recently published book.

>

> To leave the list send an email to

rosacea-support-unsubscribe

>

>

[Guest guest]

Personally, I think the biggest reason for the unbelievable lack of cea

research is that most companies don't realize that there is no effective

treatment for cea. Big companies might think, well there's

Metronidazole, tetracyclines, sulfur products, Isotretinoin.. why is there

a need for any more treatment? Almost every article I read on the subject

talks about how cea is easily controllable. Not until you see a rare

article actually published by an expert in the field, will you find out that

cea is absolutely 100% NOT easily controllable! And even if it cant be

controlled, unless someone personally suffers from a severe case of cea,

I don't think they can understand just how devastating it can be. Plus, the

disease is unbelievably poorly well-known.. Compared to other disorders,

there's nothing written about it anywhere.. Parkinson's disease for

example, affects 1 to 1 1/2 million americans. (Approximately 7-12% of the

amount of people who suffer from cea) But even typing in a parksinsons

(without the apostrophe, which is an incorrect spelling) will give you just

as many hits on any search engine as cea will. The correct spelling

will give you about 800% more hits than cea will. As a group if we

could get together and come up with ways to stimulate cea research, then

maybe in five or ten years there won't be as much of a need for a group like

this.

Adam

Re: cea Studies (PLEASE Read)

> Very good points , but I'm afraid I have to disagree with you.

>

> You're right when you say that this disease is so widespread, though

> not well publicized, but I think this is largely because the vast

> majority of people afflicted show such mild clinical signs that they

> are either unaware they have it or simply don't care. Such people are

> rarely members of support groups like this.

>

> In addition, the amount of research in the U.S is largely dictated by

> the drug companies who, I assure you, are well aware of the potential

> profits from widespread problems such as rosacea (just look at the

> huge drive to find a solution for male pattern baldness).

>

> The real question for these companies is what is the likelihood of

> finding an effective treatment?

>

> One piece of advice I was given in vet school was: " If you're going to

> become a specialist, be a dermatologist: you're never on call and

> nobody expects your patients to get better! "

>

> Many a true word said in jest.

>

>

>

> --

> Please read the list highlights before posting to the whole group

(http://rosacea.ii.net/toc.html). Your post will be delayed if you don't

give a meaningful subject or trim your reply text. You must change the

subject when replying to a digest !

>

> See http://www.drnase.com for info on his recently published book.

>

> To leave the list send an email to

rosacea-support-unsubscribe

>

>

[Guest guest]

I agree, englishvet. In fact, I believe rosacea falls within the

Orphan Drug legislation, which gives pharmaceutical companies extra

benefits for researching rosacea. Besides, research in the US is not

wholly dictated by pharmaceutical companies; academic medical centers

are responsible for most of the best work in clinical medicine.

Pharmaceutical companies fund much of the research, but The National

Institutes of Health is a major source of funding, and private

corporations and organizations and the universities themselves also

contribute. A *well-designed* research project in an academic setting

can find funding; universities employ personnel who's sole job is to

assist researchers in locating funding and completing grant

applications.

I think there are effective treatments for rosacea in our future --

certainly in safer, better non-inflammatory agents, in improved

phototherapies, and possibly for drugs that minimize flushing and

facial pain, should any of the peptide mechanisms now in vogue pan

out. A cure for rosacea is probably outside our understanding of the

immune and vascular systems at this time, unless something comes out

of the blue.

I don't know much about the National cea Society. I know what the

Web site says, but does anyone have the inside scoop on who they are

and what they do?

Marjorie

Marjorie Lazoff, MD

> Very good points , but I'm afraid I have to disagree with you.

>

> You're right when you say that this disease is so widespread, though

> not well publicized, but I think this is largely because the vast

> majority of people afflicted show such mild clinical signs that

they

> are either unaware they have it or simply don't care. Such people

are

> rarely members of support groups like this.

>

> In addition, the amount of research in the U.S is largely dictated

by

> the drug companies who, I assure you, are well aware of the

potential

> profits from widespread problems such as rosacea (just look at the

> huge drive to find a solution for male pattern baldness).

>

> The real question for these companies is what is the likelihood of

> finding an effective treatment?

>

> One piece of advice I was given in vet school was: " If you're going

to

> become a specialist, be a dermatologist: you're never on call and

> nobody expects your patients to get better! "

>

> Many a true word said in jest.

[Guest guest]

I agree, englishvet. In fact, I believe rosacea falls within the

Orphan Drug legislation, which gives pharmaceutical companies extra

benefits for researching rosacea. Besides, research in the US is not

wholly dictated by pharmaceutical companies; academic medical centers

are responsible for most of the best work in clinical medicine.

Pharmaceutical companies fund much of the research, but The National

Institutes of Health is a major source of funding, and private

corporations and organizations and the universities themselves also

contribute. A *well-designed* research project in an academic setting

can find funding; universities employ personnel who's sole job is to

assist researchers in locating funding and completing grant

applications.

I think there are effective treatments for rosacea in our future --

certainly in safer, better non-inflammatory agents, in improved

phototherapies, and possibly for drugs that minimize flushing and

facial pain, should any of the peptide mechanisms now in vogue pan

out. A cure for rosacea is probably outside our understanding of the

immune and vascular systems at this time, unless something comes out

of the blue.

I don't know much about the National cea Society. I know what the

Web site says, but does anyone have the inside scoop on who they are

and what they do?

Marjorie

Marjorie Lazoff, MD

> Very good points , but I'm afraid I have to disagree with you.

>

> You're right when you say that this disease is so widespread, though

> not well publicized, but I think this is largely because the vast

> majority of people afflicted show such mild clinical signs that

they

> are either unaware they have it or simply don't care. Such people

are

> rarely members of support groups like this.

>

> In addition, the amount of research in the U.S is largely dictated

by

> the drug companies who, I assure you, are well aware of the

potential

> profits from widespread problems such as rosacea (just look at the

> huge drive to find a solution for male pattern baldness).

>

> The real question for these companies is what is the likelihood of

> finding an effective treatment?

>

> One piece of advice I was given in vet school was: " If you're going

to

> become a specialist, be a dermatologist: you're never on call and

> nobody expects your patients to get better! "

>

> Many a true word said in jest.

[Guest guest]

I agree, englishvet. In fact, I believe rosacea falls within the

Orphan Drug legislation, which gives pharmaceutical companies extra

benefits for researching rosacea. Besides, research in the US is not

wholly dictated by pharmaceutical companies; academic medical centers

are responsible for most of the best work in clinical medicine.

Pharmaceutical companies fund much of the research, but The National

Institutes of Health is a major source of funding, and private

corporations and organizations and the universities themselves also

contribute. A *well-designed* research project in an academic setting

can find funding; universities employ personnel who's sole job is to

assist researchers in locating funding and completing grant

applications.

I think there are effective treatments for rosacea in our future --

certainly in safer, better non-inflammatory agents, in improved

phototherapies, and possibly for drugs that minimize flushing and

facial pain, should any of the peptide mechanisms now in vogue pan

out. A cure for rosacea is probably outside our understanding of the

immune and vascular systems at this time, unless something comes out

of the blue.

I don't know much about the National cea Society. I know what the

Web site says, but does anyone have the inside scoop on who they are

and what they do?

Marjorie

Marjorie Lazoff, MD

> Very good points , but I'm afraid I have to disagree with you.

>

> You're right when you say that this disease is so widespread, though

> not well publicized, but I think this is largely because the vast

> majority of people afflicted show such mild clinical signs that

they

> are either unaware they have it or simply don't care. Such people

are

> rarely members of support groups like this.

>

> In addition, the amount of research in the U.S is largely dictated

by

> the drug companies who, I assure you, are well aware of the

potential

> profits from widespread problems such as rosacea (just look at the

> huge drive to find a solution for male pattern baldness).

>

> The real question for these companies is what is the likelihood of

> finding an effective treatment?

>

> One piece of advice I was given in vet school was: " If you're going

to

> become a specialist, be a dermatologist: you're never on call and

> nobody expects your patients to get better! "

>

> Many a true word said in jest.

[Guest guest]

I have to agree that the drug companies may be the haltering or block

for finding a better -practical treatment. Im wondering for example

the Nat'l cea Society, is this funded or connected with the

Galderma (metrogel) company. If so are we going to find the results

we desire.

As a group, is there anything we can do to speed up the process of

finding answers to a better treatment.

Its fine that we share our experiences with products, laser

treatments, etc. but are we getting anywhere. I feel if there is

something as a group that we can do such as getting more awareness

out to the public or by using our connections with the medical people

on this board or board members connections can we obtain step by step

goals-ultimate goal of a cure. Any thoughts on this?

I just feel I dont want to be sitting here in 5 or 10 yrs still

struggling to keep this under control with the current methods and im

sure you all feel this same way. This is going to continue to

afflict people as I read somewhere - in the next 10 yrs its estimated

to be 30 million people with rosacea.

Rose

> Personally, I think the biggest reason for the unbelievable lack of

cea

> research is that most companies don't realize that there is no

effective

> treatment for cea. Big companies might think, well there's

> Metronidazole, tetracyclines, sulfur products, Isotretinoin.. why

is there

> a need for any more treatment? Almost every article I read on the

subject

> talks about how cea is easily controllable. Not until you see

a rare

> article actually published by an expert in the field, will you find

out that

> cea is absolutely 100% NOT easily controllable! And even if it

cant be

> controlled, unless someone personally suffers from a severe case of

cea,

> I don't think they can understand just how devastating it can be.

Plus, the

> disease is unbelievably poorly well-known.. Compared to other

disorders,

> there's nothing written about it anywhere.. Parkinson's disease

for

> example, affects 1 to 1 1/2 million americans. (Approximately 7-

12% of the

> amount of people who suffer from cea) But even typing in a

parksinsons

> (without the apostrophe, which is an incorrect spelling) will give

you just

> as many hits on any search engine as cea will. The correct

spelling

> will give you about 800% more hits than cea will. As a group

if we

> could get together and come up with ways to stimulate cea

research, then

> maybe in five or ten years there won't be as much of a need for a

group like

> this.

>

> Adam

> Re: cea Studies (PLEASE Read)

>

>

> > Very good points , but I'm afraid I have to disagree with

you.

> >

> > You're right when you say that this disease is so widespread,

though

> > not well publicized, but I think this is largely because the vast

> > majority of people afflicted show such mild clinical signs that

they

> > are either unaware they have it or simply don't care. Such people

are

> > rarely members of support groups like this.

> >

> > In addition, the amount of research in the U.S is largely

dictated by

> > the drug companies who, I assure you, are well aware of the

potential

> > profits from widespread problems such as rosacea (just look at

the

> > huge drive to find a solution for male pattern baldness).

> >

> > The real question for these companies is what is the likelihood of

> > finding an effective treatment?

> >

> > One piece of advice I was given in vet school was: " If you're

going to

> > become a specialist, be a dermatologist: you're never on call and

> > nobody expects your patients to get better! "

> >

> > Many a true word said in jest.

> >

> >

> >

> > --

> > Please read the list highlights before posting to the whole group

> (http://rosacea.ii.net/toc.html). Your post will be delayed if you

don't

> give a meaningful subject or trim your reply text. You must change

the

> subject when replying to a digest !

> >

> > See http://www.drnase.com for info on his recently published book.

> >

> > To leave the list send an email to

> rosacea-support-unsubscribe@y...

> >

> >

[Guest guest]

I have to agree that the drug companies may be the haltering or block

for finding a better -practical treatment. Im wondering for example

the Nat'l cea Society, is this funded or connected with the

Galderma (metrogel) company. If so are we going to find the results

we desire.

As a group, is there anything we can do to speed up the process of

finding answers to a better treatment.

Its fine that we share our experiences with products, laser

treatments, etc. but are we getting anywhere. I feel if there is

something as a group that we can do such as getting more awareness

out to the public or by using our connections with the medical people

on this board or board members connections can we obtain step by step

goals-ultimate goal of a cure. Any thoughts on this?

I just feel I dont want to be sitting here in 5 or 10 yrs still

struggling to keep this under control with the current methods and im

sure you all feel this same way. This is going to continue to

afflict people as I read somewhere - in the next 10 yrs its estimated

to be 30 million people with rosacea.

Rose

> Personally, I think the biggest reason for the unbelievable lack of

cea

> research is that most companies don't realize that there is no

effective

> treatment for cea. Big companies might think, well there's

> Metronidazole, tetracyclines, sulfur products, Isotretinoin.. why

is there

> a need for any more treatment? Almost every article I read on the

subject

> talks about how cea is easily controllable. Not until you see

a rare

> article actually published by an expert in the field, will you find

out that

> cea is absolutely 100% NOT easily controllable! And even if it

cant be

> controlled, unless someone personally suffers from a severe case of

cea,

> I don't think they can understand just how devastating it can be.

Plus, the

> disease is unbelievably poorly well-known.. Compared to other

disorders,

> there's nothing written about it anywhere.. Parkinson's disease

for

> example, affects 1 to 1 1/2 million americans. (Approximately 7-

12% of the

> amount of people who suffer from cea) But even typing in a

parksinsons

> (without the apostrophe, which is an incorrect spelling) will give

you just

> as many hits on any search engine as cea will. The correct

spelling

> will give you about 800% more hits than cea will. As a group

if we

> could get together and come up with ways to stimulate cea

research, then

> maybe in five or ten years there won't be as much of a need for a

group like

> this.

>

> Adam

> Re: cea Studies (PLEASE Read)

>

>

> > Very good points , but I'm afraid I have to disagree with

you.

> >

> > You're right when you say that this disease is so widespread,

though

> > not well publicized, but I think this is largely because the vast

> > majority of people afflicted show such mild clinical signs that

they

> > are either unaware they have it or simply don't care. Such people

are

> > rarely members of support groups like this.

> >

> > In addition, the amount of research in the U.S is largely

dictated by

> > the drug companies who, I assure you, are well aware of the

potential

> > profits from widespread problems such as rosacea (just look at

the

> > huge drive to find a solution for male pattern baldness).

> >

> > The real question for these companies is what is the likelihood of

> > finding an effective treatment?

> >

> > One piece of advice I was given in vet school was: " If you're

going to

> > become a specialist, be a dermatologist: you're never on call and

> > nobody expects your patients to get better! "

> >

> > Many a true word said in jest.

> >

> >

> >

> > --

> > Please read the list highlights before posting to the whole group

> (http://rosacea.ii.net/toc.html). Your post will be delayed if you

don't

> give a meaningful subject or trim your reply text. You must change

the

> subject when replying to a digest !

> >

> > See http://www.drnase.com for info on his recently published book.

> >

> > To leave the list send an email to

> rosacea-support-unsubscribe@y...

> >

> >

[Guest guest]

I agree with bigwoodward. More funding will equal more grants for

studies that may lead to increased understanding and better

treatments for rosacea. We see it happening right now with the NRS

grant towards the study of NO in skin.

If everyone on this list just decided to donate $10 or $20 to some

cause each year and chose rosacea as that cause I believe we would

see a difference. Do it on your birthday each year or on some date

you will remember. Then, when you get people calling you asking for

donations for the sherrifs association, the childrens fund, or

whatever you can proudly say " I already donate yearly to another

cause, but thanks for asking, goodbye " : )

The easiest way would be to donate to NRS: Go to

http://www.rosacea.org/rgform.html

In the past I have purchased extra Dr. Nase books (Beating cea

www.drnase.com) and given them to doctors/libraries as my yearly

donation.

Patty

> Rose,

>

> Two things in regards to your post. One is this link:

>

> http://www.centerwatch.com/patient/studies

>

> which is a service that tracks and reports on clinical trials. I

> have not yet seen anything there that my derm or this board hasn't

> covered. There are also many other specific sites that return from

> Yahoo search engine using " rosacea clinical trials. "

>

> That brings me to my next point. Please forgive me if this sounds

> like a tyrade, you just bring an excellent point. Here goes,

>

> I strongly believe that the best way to a cure, or improved

> treatment, for this thing is cash - cold, hard cash. I believe

this

> for two reasons. First, the cynical side of me says that research

> goes where the money is. Second, the hopeful side of me says that

> good researchers just need money to get their work done. I'm not

> sure I'vee seen or heard about another disease which is so

widespread

> that has drawn so little attention, and thus, research money.

>

> With that in mind, I am going to say that I am putting my money

where

> my mouth is. I intend to donate heavily to the National cea

> Society. I understand this isn't something everyone can do, but

I've

> been very fortunate, financially at least. I also really want to

be

> able to help out everyone who is suffering with this. I've also

seen

> so many " products " out there that are potentially diverting good

> monies from useful research to the pockets of some scam artist.

>

> You've helped me decide on something that I've been pondering. Why

> should we not start right here raising money for the NRS grants?

> Here's a wishful projection, but just for fun, let's say that each

of

> the $13 million people with cea just sent in $1. That's

> $13,000,000 for research, far more than has probably gone in total

to

> researching this disease.

>

> So, with that in mind, I have resolved to do several things:

>

> 1) Send in my check

> 2) Encourage each and every person on this board to do the same

> 3) Encourage research and oversight of the monies in/out of NRS to

> insure legitimacy

> 4) Urge each person who gives, to encourage others - with or

without

> rosacea, to contribute

>

> Disclaimer - I am NOT in any way going to benefit from these

> donations unless a cure is found, financially or otherwise. I do

not

> work for NRS or any drug companies. I'm just a guy with cea,

> trying to help the best way I can.

>

> I really believe a cash infusion would eventually result in some

> answers. And as for me, I want some answers.

>

> Again, thanks for the inspiration and sorry for the soap-boxing.

>

> My best regards and best wishes to all.

[Guest guest]

I agree with bigwoodward. More funding will equal more grants for

studies that may lead to increased understanding and better

treatments for rosacea. We see it happening right now with the NRS

grant towards the study of NO in skin.

If everyone on this list just decided to donate $10 or $20 to some

cause each year and chose rosacea as that cause I believe we would

see a difference. Do it on your birthday each year or on some date

you will remember. Then, when you get people calling you asking for

donations for the sherrifs association, the childrens fund, or

whatever you can proudly say " I already donate yearly to another

cause, but thanks for asking, goodbye " : )

The easiest way would be to donate to NRS: Go to

http://www.rosacea.org/rgform.html

In the past I have purchased extra Dr. Nase books (Beating cea

www.drnase.com) and given them to doctors/libraries as my yearly

donation.

Patty

> Rose,

>

> Two things in regards to your post. One is this link:

>

> http://www.centerwatch.com/patient/studies

>

> which is a service that tracks and reports on clinical trials. I

> have not yet seen anything there that my derm or this board hasn't

> covered. There are also many other specific sites that return from

> Yahoo search engine using " rosacea clinical trials. "

>

> That brings me to my next point. Please forgive me if this sounds

> like a tyrade, you just bring an excellent point. Here goes,

>

> I strongly believe that the best way to a cure, or improved

> treatment, for this thing is cash - cold, hard cash. I believe

this

> for two reasons. First, the cynical side of me says that research

> goes where the money is. Second, the hopeful side of me says that

> good researchers just need money to get their work done. I'm not

> sure I'vee seen or heard about another disease which is so

widespread

> that has drawn so little attention, and thus, research money.

>

> With that in mind, I am going to say that I am putting my money

where

> my mouth is. I intend to donate heavily to the National cea

> Society. I understand this isn't something everyone can do, but

I've

> been very fortunate, financially at least. I also really want to

be

> able to help out everyone who is suffering with this. I've also

seen

> so many " products " out there that are potentially diverting good

> monies from useful research to the pockets of some scam artist.

>

> You've helped me decide on something that I've been pondering. Why

> should we not start right here raising money for the NRS grants?

> Here's a wishful projection, but just for fun, let's say that each

of

> the $13 million people with cea just sent in $1. That's

> $13,000,000 for research, far more than has probably gone in total

to

> researching this disease.

>

> So, with that in mind, I have resolved to do several things:

>

> 1) Send in my check

> 2) Encourage each and every person on this board to do the same

> 3) Encourage research and oversight of the monies in/out of NRS to

> insure legitimacy

> 4) Urge each person who gives, to encourage others - with or

without

> rosacea, to contribute

>

> Disclaimer - I am NOT in any way going to benefit from these

> donations unless a cure is found, financially or otherwise. I do

not

> work for NRS or any drug companies. I'm just a guy with cea,

> trying to help the best way I can.

>

> I really believe a cash infusion would eventually result in some

> answers. And as for me, I want some answers.

>

> Again, thanks for the inspiration and sorry for the soap-boxing.

>

> My best regards and best wishes to all.

[Guest guest]

Patty, I absolutely agree. A twenty dollar donation from half the members

of this group would be enough money to fund an entire new study on cea

by the NRS (Such as testing the role of Nitric Oxide) We could maybe even

pool all the money together as a group before donating it and try to have a

say in what gets studied. The three major studies by the NRS each year as

near as I can tell, is the backbone of all cea research in the country

at the moment. With that type of a donation, they'd be able to do four

studies instead of three, and we might even be able to have a say in what

direction some of the research is headed.

Re: cea studies (PLEASE read)

> I agree with bigwoodward. More funding will equal more grants for

> studies that may lead to increased understanding and better

> treatments for rosacea. We see it happening right now with the NRS

> grant towards the study of NO in skin.

>

> If everyone on this list just decided to donate $10 or $20 to some

> cause each year and chose rosacea as that cause I believe we would

> see a difference. Do it on your birthday each year or on some date

> you will remember. Then, when you get people calling you asking for

> donations for the sherrifs association, the childrens fund, or

> whatever you can proudly say " I already donate yearly to another

> cause, but thanks for asking, goodbye " : )

>

> The easiest way would be to donate to NRS: Go to

> http://www.rosacea.org/rgform.html

>

> In the past I have purchased extra Dr. Nase books (Beating cea

> www.drnase.com) and given them to doctors/libraries as my yearly

> donation.

>

> Patty

>

>

> > Rose,

> >

> > Two things in regards to your post. One is this link:

> >

> > http://www.centerwatch.com/patient/studies

> >

> > which is a service that tracks and reports on clinical trials. I

> > have not yet seen anything there that my derm or this board hasn't

> > covered. There are also many other specific sites that return from

> > Yahoo search engine using " rosacea clinical trials. "

> >

> > That brings me to my next point. Please forgive me if this sounds

> > like a tyrade, you just bring an excellent point. Here goes,

> >

> > I strongly believe that the best way to a cure, or improved

> > treatment, for this thing is cash - cold, hard cash. I believe

> this

> > for two reasons. First, the cynical side of me says that research

> > goes where the money is. Second, the hopeful side of me says that

> > good researchers just need money to get their work done. I'm not

> > sure I'vee seen or heard about another disease which is so

> widespread

> > that has drawn so little attention, and thus, research money.

> >

> > With that in mind, I am going to say that I am putting my money

> where

> > my mouth is. I intend to donate heavily to the National cea

> > Society. I understand this isn't something everyone can do, but

> I've

> > been very fortunate, financially at least. I also really want to

> be

> > able to help out everyone who is suffering with this. I've also

> seen

> > so many " products " out there that are potentially diverting good

> > monies from useful research to the pockets of some scam artist.

> >

> > You've helped me decide on something that I've been pondering. Why

> > should we not start right here raising money for the NRS grants?

> > Here's a wishful projection, but just for fun, let's say that each

> of

> > the $13 million people with cea just sent in $1. That's

> > $13,000,000 for research, far more than has probably gone in total

> to

> > researching this disease.

> >

> > So, with that in mind, I have resolved to do several things:

> >

> > 1) Send in my check

> > 2) Encourage each and every person on this board to do the same

> > 3) Encourage research and oversight of the monies in/out of NRS to

> > insure legitimacy

> > 4) Urge each person who gives, to encourage others - with or

> without

> > rosacea, to contribute

> >

> > Disclaimer - I am NOT in any way going to benefit from these

> > donations unless a cure is found, financially or otherwise. I do

> not

> > work for NRS or any drug companies. I'm just a guy with cea,

> > trying to help the best way I can.

> >

> > I really believe a cash infusion would eventually result in some

> > answers. And as for me, I want some answers.

> >

> > Again, thanks for the inspiration and sorry for the soap-boxing.

> >

> > My best regards and best wishes to all.

>

>

>

> --

> Please read the list highlights before posting to the whole group

(http://rosacea.ii.net/toc.html). Your post will be delayed if you don't

give a meaningful subject or trim your reply text. You must change the

subject when replying to a digest !

>

> See http://www.drnase.com for info on his recently published book.

>

> To leave the list send an email to

rosacea-support-unsubscribe

>

>

[Guest guest]

NRS only list these links on the official NRS LINKS page at this url:

http://www.rosacea.org/links.html

University of Iowa -- Department of Dermatology

American Academy of Dermatology

American Medical Association (AMA)

Dermatology in the Cinema

InfoDerm® Information on cea

This gives you an idea of where the NRS receives money and influence.

InfoDerm is Galderma. Two links are physician organizations. Two links

are associated with education.

Brady Barrows

> I have to agree that the drug companies may be the haltering or block

> for finding a better -practical treatment. Im wondering for example

> the Nat'l cea Society, is this funded or connected with the

> Galderma (metrogel) company. If so are we going to find the results

> we desire.

>

> As a group, is there anything we can do to speed up the process of

> finding answers to a better treatment.

> Its fine that we share our experiences with products, laser

> treatments, etc. but are we getting anywhere. I feel if there is

> something as a group that we can do such as getting more awareness

> out to the public or by using our connections with the medical people

> on this board or board members connections can we obtain step by step

> goals-ultimate goal of a cure. Any thoughts on this?

>

> I just feel I dont want to be sitting here in 5 or 10 yrs still

> struggling to keep this under control with the current methods and im

> sure you all feel this same way. This is going to continue to

> afflict people as I read somewhere - in the next 10 yrs its estimated

> to be 30 million people with rosacea.

>

> Rose

>

>

>

>> Personally, I think the biggest reason for the unbelievable lack of

> cea

>> research is that most companies don't realize that there is no

> effective

>> treatment for cea. Big companies might think, well there's

>> Metronidazole, tetracyclines, sulfur products, Isotretinoin.. why

> is there

>> a need for any more treatment? Almost every article I read on the

> subject

>> talks about how cea is easily controllable. Not until you see

> a rare

>> article actually published by an expert in the field, will you find

> out that

>> cea is absolutely 100% NOT easily controllable! And even if it

> cant be

>> controlled, unless someone personally suffers from a severe case of

> cea,

>> I don't think they can understand just how devastating it can be.

> Plus, the

>> disease is unbelievably poorly well-known.. Compared to other

> disorders,

>> there's nothing written about it anywhere.. Parkinson's disease

> for

>> example, affects 1 to 1 1/2 million americans. (Approximately 7-

> 12% of the

>> amount of people who suffer from cea) But even typing in a

> parksinsons

>> (without the apostrophe, which is an incorrect spelling) will give

> you just

>> as many hits on any search engine as cea will. The correct

> spelling

>> will give you about 800% more hits than cea will. As a group

> if we

>> could get together and come up with ways to stimulate cea

> research, then

>> maybe in five or ten years there won't be as much of a need for a

> group like

>> this.

>>

>> Adam

>> Re: cea Studies (PLEASE Read)

>>

>>

>>> Very good points , but I'm afraid I have to disagree with

> you.

>>>

>>> You're right when you say that this disease is so widespread,

> though

>>> not well publicized, but I think this is largely because the vast

>>> majority of people afflicted show such mild clinical signs that

> they

>>> are either unaware they have it or simply don't care. Such people

> are

>>> rarely members of support groups like this.

>>>

>>> In addition, the amount of research in the U.S is largely

> dictated by

>>> the drug companies who, I assure you, are well aware of the

> potential

>>> profits from widespread problems such as rosacea (just look at

> the

>>> huge drive to find a solution for male pattern baldness).

>>>

>>> The real question for these companies is what is the likelihood of

>>> finding an effective treatment?

>>>

>>> One piece of advice I was given in vet school was: " If you're

> going to

>>> become a specialist, be a dermatologist: you're never on call and

>>> nobody expects your patients to get better! "

>>>

>>> Many a true word said in jest.

>>>

>>>

>>>

>>> --

>>> Please read the list highlights before posting to the whole group

>> (http://rosacea.ii.net/toc.html). Your post will be delayed if you

> don't

>> give a meaningful subject or trim your reply text. You must change

> the

>> subject when replying to a digest !

>>>

>>> See http://www.drnase.com for info on his recently published book.

>>>

>>> To leave the list send an email to

>> rosacea-support-unsubscribe@y...

>>>

>>>

[Guest guest]

NRS only list these links on the official NRS LINKS page at this url:

http://www.rosacea.org/links.html

University of Iowa -- Department of Dermatology

American Academy of Dermatology

American Medical Association (AMA)

Dermatology in the Cinema

InfoDerm® Information on cea

This gives you an idea of where the NRS receives money and influence.

InfoDerm is Galderma. Two links are physician organizations. Two links

are associated with education.

Brady Barrows

> I have to agree that the drug companies may be the haltering or block

> for finding a better -practical treatment. Im wondering for example

> the Nat'l cea Society, is this funded or connected with the

> Galderma (metrogel) company. If so are we going to find the results

> we desire.

>

> As a group, is there anything we can do to speed up the process of

> finding answers to a better treatment.

> Its fine that we share our experiences with products, laser

> treatments, etc. but are we getting anywhere. I feel if there is

> something as a group that we can do such as getting more awareness

> out to the public or by using our connections with the medical people

> on this board or board members connections can we obtain step by step

> goals-ultimate goal of a cure. Any thoughts on this?

>

> I just feel I dont want to be sitting here in 5 or 10 yrs still

> struggling to keep this under control with the current methods and im

> sure you all feel this same way. This is going to continue to

> afflict people as I read somewhere - in the next 10 yrs its estimated

> to be 30 million people with rosacea.

>

> Rose

>

>

>

>> Personally, I think the biggest reason for the unbelievable lack of

> cea

>> research is that most companies don't realize that there is no

> effective

>> treatment for cea. Big companies might think, well there's

>> Metronidazole, tetracyclines, sulfur products, Isotretinoin.. why

> is there

>> a need for any more treatment? Almost every article I read on the

> subject

>> talks about how cea is easily controllable. Not until you see

> a rare

>> article actually published by an expert in the field, will you find

> out that

>> cea is absolutely 100% NOT easily controllable! And even if it

> cant be

>> controlled, unless someone personally suffers from a severe case of

> cea,

>> I don't think they can understand just how devastating it can be.

> Plus, the

>> disease is unbelievably poorly well-known.. Compared to other

> disorders,

>> there's nothing written about it anywhere.. Parkinson's disease

> for

>> example, affects 1 to 1 1/2 million americans. (Approximately 7-

> 12% of the

>> amount of people who suffer from cea) But even typing in a

> parksinsons

>> (without the apostrophe, which is an incorrect spelling) will give

> you just

>> as many hits on any search engine as cea will. The correct

> spelling

>> will give you about 800% more hits than cea will. As a group

> if we

>> could get together and come up with ways to stimulate cea

> research, then

>> maybe in five or ten years there won't be as much of a need for a

> group like

>> this.

>>

>> Adam

>> Re: cea Studies (PLEASE Read)

>>

>>

>>> Very good points , but I'm afraid I have to disagree with

> you.

>>>

>>> You're right when you say that this disease is so widespread,

> though

>>> not well publicized, but I think this is largely because the vast

>>> majority of people afflicted show such mild clinical signs that

> they

>>> are either unaware they have it or simply don't care. Such people

> are

>>> rarely members of support groups like this.

>>>

>>> In addition, the amount of research in the U.S is largely

> dictated by

>>> the drug companies who, I assure you, are well aware of the

> potential

>>> profits from widespread problems such as rosacea (just look at

> the

>>> huge drive to find a solution for male pattern baldness).

>>>

>>> The real question for these companies is what is the likelihood of

>>> finding an effective treatment?

>>>

>>> One piece of advice I was given in vet school was: " If you're

> going to

>>> become a specialist, be a dermatologist: you're never on call and

>>> nobody expects your patients to get better! "

>>>

>>> Many a true word said in jest.

>>>

>>>

>>>

>>> --

>>> Please read the list highlights before posting to the whole group

>> (http://rosacea.ii.net/toc.html). Your post will be delayed if you

> don't

>> give a meaningful subject or trim your reply text. You must change

> the

>> subject when replying to a digest !

>>>

>>> See http://www.drnase.com for info on his recently published book.

>>>

>>> To leave the list send an email to

>> rosacea-support-unsubscribe@y...

>>>

>>>

[Guest guest]

NRS only list these links on the official NRS LINKS page at this url:

http://www.rosacea.org/links.html

University of Iowa -- Department of Dermatology

American Academy of Dermatology

American Medical Association (AMA)

Dermatology in the Cinema

InfoDerm® Information on cea

This gives you an idea of where the NRS receives money and influence.

InfoDerm is Galderma. Two links are physician organizations. Two links

are associated with education.

Brady Barrows

> I have to agree that the drug companies may be the haltering or block

> for finding a better -practical treatment. Im wondering for example

> the Nat'l cea Society, is this funded or connected with the

> Galderma (metrogel) company. If so are we going to find the results

> we desire.

>

> As a group, is there anything we can do to speed up the process of

> finding answers to a better treatment.

> Its fine that we share our experiences with products, laser

> treatments, etc. but are we getting anywhere. I feel if there is

> something as a group that we can do such as getting more awareness

> out to the public or by using our connections with the medical people

> on this board or board members connections can we obtain step by step

> goals-ultimate goal of a cure. Any thoughts on this?

>

> I just feel I dont want to be sitting here in 5 or 10 yrs still

> struggling to keep this under control with the current methods and im

> sure you all feel this same way. This is going to continue to

> afflict people as I read somewhere - in the next 10 yrs its estimated

> to be 30 million people with rosacea.

>

> Rose

>

>

>

>> Personally, I think the biggest reason for the unbelievable lack of

> cea

>> research is that most companies don't realize that there is no

> effective

>> treatment for cea. Big companies might think, well there's

>> Metronidazole, tetracyclines, sulfur products, Isotretinoin.. why

> is there

>> a need for any more treatment? Almost every article I read on the

> subject

>> talks about how cea is easily controllable. Not until you see

> a rare

>> article actually published by an expert in the field, will you find

> out that

>> cea is absolutely 100% NOT easily controllable! And even if it

> cant be

>> controlled, unless someone personally suffers from a severe case of

> cea,

>> I don't think they can understand just how devastating it can be.

> Plus, the

>> disease is unbelievably poorly well-known.. Compared to other

> disorders,

>> there's nothing written about it anywhere.. Parkinson's disease

> for

>> example, affects 1 to 1 1/2 million americans. (Approximately 7-

> 12% of the

>> amount of people who suffer from cea) But even typing in a

> parksinsons

>> (without the apostrophe, which is an incorrect spelling) will give

> you just

>> as many hits on any search engine as cea will. The correct

> spelling

>> will give you about 800% more hits than cea will. As a group

> if we

>> could get together and come up with ways to stimulate cea

> research, then

>> maybe in five or ten years there won't be as much of a need for a

> group like

>> this.

>>

>> Adam

>> Re: cea Studies (PLEASE Read)

>>

>>

>>> Very good points , but I'm afraid I have to disagree with

> you.

>>>

>>> You're right when you say that this disease is so widespread,

> though

>>> not well publicized, but I think this is largely because the vast

>>> majority of people afflicted show such mild clinical signs that

> they

>>> are either unaware they have it or simply don't care. Such people

> are

>>> rarely members of support groups like this.

>>>

>>> In addition, the amount of research in the U.S is largely

> dictated by

>>> the drug companies who, I assure you, are well aware of the

> potential

>>> profits from widespread problems such as rosacea (just look at

> the

>>> huge drive to find a solution for male pattern baldness).

>>>

>>> The real question for these companies is what is the likelihood of

>>> finding an effective treatment?

>>>

>>> One piece of advice I was given in vet school was: " If you're

> going to

>>> become a specialist, be a dermatologist: you're never on call and

>>> nobody expects your patients to get better! "

>>>

>>> Many a true word said in jest.

>>>

>>>

>>>

>>> --

>>> Please read the list highlights before posting to the whole group

>> (http://rosacea.ii.net/toc.html). Your post will be delayed if you

> don't

>> give a meaningful subject or trim your reply text. You must change

> the

>> subject when replying to a digest !

>>>

>>> See http://www.drnase.com for info on his recently published book.

>>>

>>> To leave the list send an email to

>> rosacea-support-unsubscribe@y...

>>>

>>>

[Guest guest]

Unfortunately, I don't think it's worth our efforts to donate any

money to the NRS. A journalist (from one of the nation's major

newspapers) investigating them told me that as much as 80% of their

money is directed towards advancing Galderma and not towards any

research. Granted, I have not looked into this personally, so I can't

confirm it, but I have no reason to doubt this person. Any charitable

organization's books are wide open for public scrutiny.

Even if the above is not true, I have a problem with a highly

profitable pharmaceutical company masquerading as a charity to fund

R&D of their own products. Any money would probably be better spent

donated to any med school undertaking rosacea research.

I hate to be so cynical, but this disease as opened my eyes a bit.

> > > Rose,

> > >

> > > Two things in regards to your post. One is this link:

> > >

> > > http://www.centerwatch.com/patient/studies

> > >

> > > which is a service that tracks and reports on clinical trials.

I

> > > have not yet seen anything there that my derm or this board

hasn't

> > > covered. There are also many other specific sites that return

from

> > > Yahoo search engine using " rosacea clinical trials. "

> > >

> > > That brings me to my next point. Please forgive me if this

sounds

> > > like a tyrade, you just bring an excellent point. Here goes,

> > >

> > > I strongly believe that the best way to a cure, or improved

> > > treatment, for this thing is cash - cold, hard cash. I believe

> > this

> > > for two reasons. First, the cynical side of me says that

research

> > > goes where the money is. Second, the hopeful side of me says

that

> > > good researchers just need money to get their work done. I'm

not

> > > sure I'vee seen or heard about another disease which is so

> > widespread

> > > that has drawn so little attention, and thus, research money.

> > >

> > > With that in mind, I am going to say that I am putting my money

> > where

> > > my mouth is. I intend to donate heavily to the National cea

> > > Society. I understand this isn't something everyone can do, but

> > I've

> > > been very fortunate, financially at least. I also really want

to

> > be

> > > able to help out everyone who is suffering with this. I've also

> > seen

> > > so many " products " out there that are potentially diverting good

> > > monies from useful research to the pockets of some scam artist.

> > >

> > > You've helped me decide on something that I've been pondering.

Why

> > > should we not start right here raising money for the NRS grants?

> > > Here's a wishful projection, but just for fun, let's say that

each

> > of

> > > the $13 million people with cea just sent in $1. That's

> > > $13,000,000 for research, far more than has probably gone in

total

> > to

> > > researching this disease.

> > >

> > > So, with that in mind, I have resolved to do several things:

> > >

> > > 1) Send in my check

> > > 2) Encourage each and every person on this board to do the same

> > > 3) Encourage research and oversight of the monies in/out of

NRS to

> > > insure legitimacy

> > > 4) Urge each person who gives, to encourage others - with or

> > without

> > > rosacea, to contribute

> > >

> > > Disclaimer - I am NOT in any way going to benefit from these

> > > donations unless a cure is found, financially or otherwise. I

do

> > not

> > > work for NRS or any drug companies. I'm just a guy with

cea,

> > > trying to help the best way I can.

> > >

> > > I really believe a cash infusion would eventually result in some

> > > answers. And as for me, I want some answers.

> > >

> > > Again, thanks for the inspiration and sorry for the soap-boxing.

> > >

> > > My best regards and best wishes to all.

> >

> >

> >

> > --

> > Please read the list highlights before posting to the whole group

> (http://rosacea.ii.net/toc.html). Your post will be delayed if you

don't

> give a meaningful subject or trim your reply text. You must change

the

> subject when replying to a digest !

> >

> > See http://www.drnase.com for info on his recently published book.

> >

> > To leave the list send an email to

> rosacea-support-unsubscribe@y...

> >

> >

[Guest guest]

Unfortunately, I don't think it's worth our efforts to donate any

money to the NRS. A journalist (from one of the nation's major

newspapers) investigating them told me that as much as 80% of their

money is directed towards advancing Galderma and not towards any

research. Granted, I have not looked into this personally, so I can't

confirm it, but I have no reason to doubt this person. Any charitable

organization's books are wide open for public scrutiny.

Even if the above is not true, I have a problem with a highly

profitable pharmaceutical company masquerading as a charity to fund

R&D of their own products. Any money would probably be better spent

donated to any med school undertaking rosacea research.

I hate to be so cynical, but this disease as opened my eyes a bit.

> > > Rose,

> > >

> > > Two things in regards to your post. One is this link:

> > >

> > > http://www.centerwatch.com/patient/studies

> > >

> > > which is a service that tracks and reports on clinical trials.

I

> > > have not yet seen anything there that my derm or this board

hasn't

> > > covered. There are also many other specific sites that return

from

> > > Yahoo search engine using " rosacea clinical trials. "

> > >

> > > That brings me to my next point. Please forgive me if this

sounds

> > > like a tyrade, you just bring an excellent point. Here goes,

> > >

> > > I strongly believe that the best way to a cure, or improved

> > > treatment, for this thing is cash - cold, hard cash. I believe

> > this

> > > for two reasons. First, the cynical side of me says that

research

> > > goes where the money is. Second, the hopeful side of me says

that

> > > good researchers just need money to get their work done. I'm

not

> > > sure I'vee seen or heard about another disease which is so

> > widespread

> > > that has drawn so little attention, and thus, research money.

> > >

> > > With that in mind, I am going to say that I am putting my money

> > where

> > > my mouth is. I intend to donate heavily to the National cea

> > > Society. I understand this isn't something everyone can do, but

> > I've

> > > been very fortunate, financially at least. I also really want

to

> > be

> > > able to help out everyone who is suffering with this. I've also

> > seen

> > > so many " products " out there that are potentially diverting good

> > > monies from useful research to the pockets of some scam artist.

> > >

> > > You've helped me decide on something that I've been pondering.

Why

> > > should we not start right here raising money for the NRS grants?

> > > Here's a wishful projection, but just for fun, let's say that

each

> > of

> > > the $13 million people with cea just sent in $1. That's

> > > $13,000,000 for research, far more than has probably gone in

total

> > to

> > > researching this disease.

> > >

> > > So, with that in mind, I have resolved to do several things:

> > >

> > > 1) Send in my check

> > > 2) Encourage each and every person on this board to do the same

> > > 3) Encourage research and oversight of the monies in/out of

NRS to

> > > insure legitimacy

> > > 4) Urge each person who gives, to encourage others - with or

> > without

> > > rosacea, to contribute

> > >

> > > Disclaimer - I am NOT in any way going to benefit from these

> > > donations unless a cure is found, financially or otherwise. I

do

> > not

> > > work for NRS or any drug companies. I'm just a guy with

cea,

> > > trying to help the best way I can.

> > >

> > > I really believe a cash infusion would eventually result in some

> > > answers. And as for me, I want some answers.

> > >

> > > Again, thanks for the inspiration and sorry for the soap-boxing.

> > >

> > > My best regards and best wishes to all.

> >

> >

> >

> > --

> > Please read the list highlights before posting to the whole group

> (http://rosacea.ii.net/toc.html). Your post will be delayed if you

don't

> give a meaningful subject or trim your reply text. You must change

the

> subject when replying to a digest !

> >

> > See http://www.drnase.com for info on his recently published book.

> >

> > To leave the list send an email to

> rosacea-support-unsubscribe@y...

> >

> >

[Guest guest]

Unfortunately, I don't think it's worth our efforts to donate any

money to the NRS. A journalist (from one of the nation's major

newspapers) investigating them told me that as much as 80% of their

money is directed towards advancing Galderma and not towards any

research. Granted, I have not looked into this personally, so I can't

confirm it, but I have no reason to doubt this person. Any charitable

organization's books are wide open for public scrutiny.

Even if the above is not true, I have a problem with a highly

profitable pharmaceutical company masquerading as a charity to fund

R&D of their own products. Any money would probably be better spent

donated to any med school undertaking rosacea research.

I hate to be so cynical, but this disease as opened my eyes a bit.

> > > Rose,

> > >

> > > Two things in regards to your post. One is this link:

> > >

> > > http://www.centerwatch.com/patient/studies

> > >

> > > which is a service that tracks and reports on clinical trials.

I

> > > have not yet seen anything there that my derm or this board

hasn't

> > > covered. There are also many other specific sites that return

from

> > > Yahoo search engine using " rosacea clinical trials. "

> > >

> > > That brings me to my next point. Please forgive me if this

sounds

> > > like a tyrade, you just bring an excellent point. Here goes,

> > >

> > > I strongly believe that the best way to a cure, or improved

> > > treatment, for this thing is cash - cold, hard cash. I believe

> > this

> > > for two reasons. First, the cynical side of me says that

research

> > > goes where the money is. Second, the hopeful side of me says

that

> > > good researchers just need money to get their work done. I'm

not

> > > sure I'vee seen or heard about another disease which is so

> > widespread

> > > that has drawn so little attention, and thus, research money.

> > >

> > > With that in mind, I am going to say that I am putting my money

> > where

> > > my mouth is. I intend to donate heavily to the National cea

> > > Society. I understand this isn't something everyone can do, but

> > I've

> > > been very fortunate, financially at least. I also really want

to

> > be

> > > able to help out everyone who is suffering with this. I've also

> > seen

> > > so many " products " out there that are potentially diverting good

> > > monies from useful research to the pockets of some scam artist.

> > >

> > > You've helped me decide on something that I've been pondering.

Why

> > > should we not start right here raising money for the NRS grants?

> > > Here's a wishful projection, but just for fun, let's say that

each

> > of

> > > the $13 million people with cea just sent in $1. That's

> > > $13,000,000 for research, far more than has probably gone in

total

> > to

> > > researching this disease.

> > >

> > > So, with that in mind, I have resolved to do several things:

> > >

> > > 1) Send in my check

> > > 2) Encourage each and every person on this board to do the same

> > > 3) Encourage research and oversight of the monies in/out of

NRS to

> > > insure legitimacy

> > > 4) Urge each person who gives, to encourage others - with or

> > without

> > > rosacea, to contribute

> > >

> > > Disclaimer - I am NOT in any way going to benefit from these

> > > donations unless a cure is found, financially or otherwise. I

do

> > not

> > > work for NRS or any drug companies. I'm just a guy with

cea,

> > > trying to help the best way I can.

> > >

> > > I really believe a cash infusion would eventually result in some

> > > answers. And as for me, I want some answers.

> > >

> > > Again, thanks for the inspiration and sorry for the soap-boxing.

> > >

> > > My best regards and best wishes to all.

> >

> >

> >

> > --

> > Please read the list highlights before posting to the whole group

> (http://rosacea.ii.net/toc.html). Your post will be delayed if you

don't

> give a meaningful subject or trim your reply text. You must change

the

> subject when replying to a digest !

> >

> > See http://www.drnase.com for info on his recently published book.

> >

> > To leave the list send an email to

> rosacea-support-unsubscribe@y...

> >

> >

[Guest guest]

(from )

> Even if the above is not true, I have a problem with a highly

> profitable pharmaceutical company masquerading as a charity to fund

> R&D of their own products...

Maybe the person writing the expose for Salon.com would find a better

article in clarifying the relationship between NRS and Galderma.

Marjorie

Marjorie Lazoff, MD

[Guest guest]

(from )

> Even if the above is not true, I have a problem with a highly

> profitable pharmaceutical company masquerading as a charity to fund

> R&D of their own products...

Maybe the person writing the expose for Salon.com would find a better

article in clarifying the relationship between NRS and Galderma.

Marjorie

Marjorie Lazoff, MD

[Guest guest]

(from )

> Even if the above is not true, I have a problem with a highly

> profitable pharmaceutical company masquerading as a charity to fund

> R&D of their own products...

Maybe the person writing the expose for Salon.com would find a better

article in clarifying the relationship between NRS and Galderma.

Marjorie

Marjorie Lazoff, MD

[Guest guest]

I appreciate all the responses, direct and posted here. However, I

think my point may have been unclear. The NRS was the most likely

target for funds, however, my main point was that I think WE need to

take it upon ourselves to gather funds for research. Distribution of

the funds can be looked at as simply administrative, with the real

challenge in building awareness and capital.

Thanks again to all those who realize that it is time to step up and

try to make a real difference.

Regards.